The news is in! They want to kick us out of here on Sunday morning!
Judah will be coming home with a pretty big list of health concerns, and needs to be followed closely by our Cardiologists in Pittsburgh, but once he gets out of a hospital bed, a LOT will surely improve quickly. Continue reading
After a bit of a rocky start of life without a trach, Judah is healing and working hard toward going home!
So Judah, post extubation, retained A LOT of fluid, mostly around his lungs. He also required hefty doses of morphine while intubated, so withdrawal was very tough on him. However, this week he has turned a HUGE corner, kicked off the withdrawal and extra fluid and doesn’t need anymore oxygen! So now we really get to see Judah without tubes, wires or a TRACH!!! Continue reading
Recovery is a process! Some things are easy, and some things take much longer.
Judah is having his “usual” recovery issues – he tends to retain a lot of fluid, particularly in his lungs. That makes breathing harder to do, and there are some non-invasive ways of dealing with that, and some more invasive ways if we need to. So far, we’re trying some diuretics and it seems to be helping. We’ll have to see if Judah needs any more help in getting rid of excess fluid.
He’s also still on quite a cocktail, and may be for several weeks. He spent a LOT of time on a very high dose of several addictive medications, so it’s a process to come off of them. Continue reading
Happy St. Paddy’s Day!
Judah is celebrating in true Irish form – deep in withdrawal. Aside from the timed out bouts of discomfort, Judah is plowing headfirst into feeling better, as our Judah always does. He has no time for anything that stands in his way of playtime. He has even been pointing out the window at the sunny sky, telling me he wants to go outside. Continue reading
We finally said goodbye to Judah’s breathing tube!
I wish I could say it’s been smooth sailing, but the past two days have been rocky. Judah’s throat, nose and adenoids have been very irritated by the breathing tube, causing a lot of bleeding. He’s been moved from heavy narcotics to weaning drugs, causing him a lot of hard withdrawal symptoms. And extubation was pretty scary. Continue reading
So Judah is STILL sedated (ish). Tomorrow morning at 11:30, the surgeons will examine his reconstruction and size down his breathing tube if everything looks as it should. Then, if all is going well, the breathing tube will come out on Tuesday and hopefully we can say goodbye to all the crazy meds and see how he does with no trach at all! I’m hoping things get very loud this week.
I say sedated(ish) because Judah is our little warrior and still fighting like a champion! Continue reading
Judah has been sedated for nearly a week at this point, and even though I’ve been right by his side, I miss him terribly. Though as I sit by his bedside, I think of all the mothers who have watched over their ill and healing loved ones throughout the ages, and I’m proud to carry on this ancient tradition. We have a lot more help these days, but Mom’s always here to make sure things are ok. That’s universal and timeless. Continue reading
Quick update for family, friends, and fans
As Judah’s nurses might expect, his tummy and his need to get out of bed are the biggest issues. Even though he is LIQUORED UP, our little bear fights through it and tries to move around (BIG no no with the breathing tube). And because he’s got plenty of meds going, his belly has stopped. So he’s getting nutrition in a way that’s a bit more invasive.
But he’s been mostly comfortable this week, and our team is AWESOME at problem solving! Continue reading
The day we have long awaited has finally come, and it went better than we ever could have imagined. Continue reading
As of last night we have arrived in Cincinnati. Now we prepare for the long awaited next steps and Judah’s 2nd attempt at a Laryngotracheal Reconstruction, this time with the amazing team at Children’s Hospital of Cincinnati, bright and early tomorrow morning. Continue reading